Did I Give Myself Cancer?

It’s a question you’re going to ask yourself sooner or later. If not this question then a version of it. “Why did I get cancer?” “What caused my cancer?” “What could I have done to avoid cancer?” But honestly, the big question is this one.

Did I give myself cancer?

Was it the smoking? Cigarettes are a group one carcinogen and known to contribute to all sorts of cancers, including breast cancer. There are still people that think smoking will only increase your risk of lung cancer. They don’t know how to google. Kim and Donna taught me to smoke when I was thirteen. They were in the year above me at school. I wonder if either of them have cancer.

But I gave up over ten years ago. All the hype around giving up said that after ten years my cancer risk would be the same as everyone else’s. Still, the years of smoking can’t have helped.

Maybe it was side stream smoke. Both my parents smoked. Dad smoked a pipe. I used to sit on his lap while he smoked it. Mum smoked Alpine menthol cigarettes. I associated the smell of tobacco smoke with home.

Most of my early jobs involved work environments full of smoke including bars and restaurants, back when they used to be full of smokers. I’m always fascinated by the research that proves side stream smoke is even more dangerous than smoking. If that’s true, how did they ever establish smoking as a risk? Shouldn’t the people around the smokers have been the ones getting cancer? Anyway, the side stream smoke can’t have helped.

Maybe it’s genetics. My Dad died of cancer at fifty eight. But it wasn’t the same type of cancer. He had bladder cancer. They tell me nobody dies of bladder cancer any more. He just got it a decade too soon. I wonder how soon they’ll find a cure for triple negative breast cancer. I hope it’s not ten years after I’m dead. Maybe having a parent with any kind of cancer makes it more likely that you’ll get cancer. But my mother is nearly eighty and really well for her age so I could just as easily have inherited her DNA. And she smoked for years.

It could be the drinking. Why did I have to get cancer to find out that alcohol is a group one carcinogen, just like cigarettes? How come the only friend I know that has ever had breast cancer is also the one that turns up with lots of wine? I used to be a police officer and after work drinking was not just about relaxing after work, it was also a way to be accepted in a male dominated profession. Being able to ‘drink like a man’ was an asset if you wanted to fit in. Of course I’ve also had long period of time where I didn’t drink or drank very little. Pregnancy, breast feeding and looking after a little human all involved giving up alcohol. I think my daughter was five before she saw me affected by alcohol and that was an accident. I had no idea the lemon and vodka mixers my friend was serving up had so much alcohol in them. Even so, in recent years my husband and I have regularly split a bottle of wine over dinner and it turns out that’s enough to double my risk of breast cancer, so the alcohol can’t have helped.

It’s certainly not any kind of drug taking because I’ve never been into recreational drugs. I don’t think I’ve ever been exposed to high risk substances but then Dad and I used to have fun in the garage restoring old furniture and all those solvents are bad for you. Of course it turns out that cannabis might have some kind of preventative effect against cancer but it hasn’t been conclusively proven and the tradition of mixing it with tobacco and smoking it probably counteracts any benefit. Still, it makes you wonder about all the things you didn’t do that might have prevented cancer.

Maybe I should have had more children. Having children or, more accurately, being pregnant, seems to reduce the risk of breast cancer. Of course I know of women with four or more children that still get breast cancer but more children might have protected me. I also developed mastitis when I was breast feeding and the tissue never fully recovered. The mastitis was in the same breast as the tumours so who knows if there’s a link.

Maybe I should have given up red meat, or food additives, or sugar, or food colouring, or any kind of cleaning product other than a micro fibre cloth. But we’ve been eating really well for a very long time. We’ve paid extra for organic vegetables and meat. You won’t find any soft drink in our fridge. But then the fluoride in the water could be to blame, except that I grew up in an area that only added flouride recently and now we have tank water. Maybe it’s the tank water.

It could be something to do with having a vitamin D deficiency for so long. Of course, I got that from covering up in the sun to prevent skin cancer. Get sun. Don’t get sun. It seems there’s no winning with this one. My surgeon used to be sure that vitamin D was a critical factor but now she tells me the evidence isn’t compelling. Maybe if I just get sun on one half of my body from now on.

Maybe it’s the Wifi that zips through our steel framed house so we can all have access to the internet. We’ve got a family friend with a PhD in electrical engineering and he’s sure that wireless is causing all kinds of cancers. He’s loaned me a couple of books but they’re short on causal link. Just because two things happen at the same time doesn’t mean that one causes the other. Still, should we go back to plugging in our devices? Should I give up blogging? Maybe the laptop is killing me. Or the microwave. Or chem-trails left by jets.

Perhaps it’s my weight. Obesity is a known risk factor for cancer. The thinner you are the less likely you are to have tumours. But I’ve never been obese. I was naturally thin all the way up to my first pregnancy. After that my body wanted to add another ten kilos, no matter what I did but I was never seriously overweight. I haven’t been a regular at the gym until about five years ago when I found a wonderful yoga class but I’ve always been a busy, active person. I walk too fast and find it hard to sit still.

Maybe it’s stress. I spent twenty years in a very stressful occupation, particularly the part of it involving child protection work. I was so stressed I eventually retired medically unfit for duty. But the recent research says stress doesn’t give you cancer. Still, all that stress can’t have helped my immune system very much.

I wonder if my eating pattern contributed to anything. When I was young I used to skip breakfast and eat dinner early. These days they call that ‘intermittent fasting’ or ‘having a longer fasting window’ so perhaps that stint I had at Weight Watchers where they insisted that I eat breakfast is part of the problem. Having a longer gap between your last meal of the day and your first meal of the day gives your body a chance to clean up any damaged cells, like the ones that become cancer. Ironically, it seems to also help you to stay a healthy weight.

According to Louise Hay I gave myself cancer. I’ve been holding on to resentment or hatred. I suppose the cancer came back because I was sill holding on to resentment or hatred, according to her. Except that anyone that knows me will tell you I’m chronically optimistic. I love my life and all of the people in it. If I’m harbouring any cancer-causing resentment it’s undetectable. I guess the advantage of Louise’s philosophy is that dead people can’t argue with her and living devotees don’t want to.

Maybe I should have practiced more positive thinking. It seems to be the one thing that everyone tells you to do when you have cancer. “Stay positive!” they say and so you wonder if that means you’re not already perceived as someone who’s positive, or if they think that you already are and should stay that way. Of course positive thinking is supposed to have an impact on everything from your immune system to your longevity but nobody has been able to conclusively prove through a double blind human trial that it can make any difference at all to your recovery from cancer. And anyway, I am positive!

Maybe the garden gave me cancer. I remember a couple of years back when a storm brought down a tree and decided to prune back the branches. I gathered up a bunch of leafy twigs and bent them back to cut through them. Some of them flicked back as I cut them and stabbed me in the chest, just about where my tumours ultimately formed. I can remember having this thought at the time, “If that scar tissue turns into cancer I will have been killed by a tree! Me, who has planted so many trees!” I don’t even know if scar tissue makes me more susceptible to cancer. It was probably just my brain being adventurous.

One of the most interesting things about having cancer is all of the different people I’ve met while I’ve been having treatment. I’ve met women that have never smoked and women that have never consumed alcohol, or consumed it only occasionally. I’ve met women with lots of children and women with none. One of the fittest women I’ve met had different kinds of cancers in both her breasts. Some of these women have been older than me and some have been younger. Some are doing everything they can to prevent recurrence and others are partying hard.

When I look around me I see women that are seriously overweight that don’t have cancer and women that smoke a packet a day and don’t have cancer and women that drink a bottle of wine or more a night and don’t have cancer.

Did I give myself cancer? What I know for sure is that nobody knows. Any one of the things I’ve been exposed to might have contributed and it might also be none of these things. Nobody with breast cancer can ever be sure. Even people with one of the ‘cancer genes’ don’t necessarily get breast cancer. It’s a lottery.

So if, like me, you’ve spent time wondering what you did wrong, here’s my proposal. Instead of wondering what I might or might not have done to get cancer I’m going to focus on what I can reasonably do to prevent it coming back.

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A Warning About Calcium and Vitamin D Supplements

IMPORTANT HEALTH WARNING: New Scientist for the 30th of August 2014 has a great article about the current scientific research into vitamin and mineral supplements. It’s no surprise that most of them are useless. Vitamin D and Fish Oil get the tick but if you’re like a lot of post menopausal woman and taking a vitamin D supplement that includes calcium then please read this:

“Too much calcium from supplements can cause kidney stones. But of graver concern are risks to the heart. A five year trial of post menopausal women found that those taking the supplements were more likely to suffer a heart attack or a stroke than those who didn’t. A subsequent analysis confirmed the increased risk. As a result of such studies, medical advice is changing. Last year the US Preventative Services Task Force changed its guidance to recommend against the combination of calcium and vitamin D supplements for post menopausal women.”

So if you’re vitamin D deficient take a supplement that doesn’t contain calcium (in Australia, Blackmores make one) or better still, try to get the recommended amount of sunshine on bare skin for your location. New Scientist also published research about a year ago that established the superiority of sunshine over supplements.

This is particularly important for anyone facing chemotherapy. Oncologists typically (and sensibly) recommend a vitamin D supplement because we need to avoid direct sunlight during chemo. Many of the commercially available supplements, like ‘Caltrate’  contain calcium. Check to make sure you’re not taking something that might compromise your health.

I’m a big fan of A2 milk and get plenty of calcium in my diet. If you’re not a milk drinker then google ‘food sources of calcium’ to make sure you’re eating enough.

 

My Last Post, Gabapentin and the Bleeding Edge

A few things have happened since my last post.

Firstly, my friend, Shelly, contacted me to make sure I was okay. Something about the post worried her. She thought it sounded like I’d given up while at the same time being sure that I never would.

Then a couple of days ago I made this comment to my husband:

“You know, I can understand why people with cancer decide to suicide, even when they haven’t reached the point where they are terminal. I used to see cases like this when I was a cop and it always confused me. Why give up when there was still hope? Now I understand. It’s about control. It’s a way to avoid this endless uncertainty and the potential cycle into a long, slow death. It’s a way of beating the cancer because you can decide when you’re going to die rather than letting cancer do that……..not that I’m thinking about suicide. Not yet. But I might in the future. I never understood all of this before now.”

Wait. Did I just say ‘suicide’?

When I was a police officer working in child protection I sometimes used to speak to groups of parents about their teenagers. One of the pieces of advice I gave them was to always treat any conversation about suicide as a flag, even if that conversation was hypothetical or third person. Conversations that seemed to accept suicide as reasonable should ring alarm bells. Further investigation, probably with the help of a psychologist, was the best course of action.

So some part of my brain raised a tiny flag. Shelly’s comment prompted me to take a moment for self analysis. I knew I hadn’t given up but something was definitely going on. I had burst into tears when I went for a massage. I had left there and gone over to my Mum’s place and had another good cry. I wanted to put this down to some kind of natural grief process. It would be reasonable after everything I’ve been through. I’ve been practicing ‘Acceptance Commitment Therapy’ techniques and making room for the sadness rather than fighting against it, which would have been my habit previously.

My brother came to visit with his wife and adorable son. I found myself hoping that he wouldn’t say, “How are you?” because I would have burst into tears. He didn’t. The minute they’d left I wanted him to come back and ask me. I put it down to just feeling blue but when I ran my own personal audit I realised that something was off.

You might recall that my surgeon recently prescribed gabapentin for my nerve pain and peripheral neuropathy. This seemed to be effective when I was in hospital. She prescribed a lower dose and it really didn’t seem to be making any difference. I googled it. This is part of what I found:

In 2009 the U.S. Food and Drug Administration issued a warning of an increased risk of depression and suicidal thoughts and behaviors in patients taking gabapentin, along with other anticonvulsant drugs modifying the packaging insert to reflect this. A 2010 meta analysis confirmed the increased risk of suicide associated with gabapentin use.

So first of all, what packet insert? The packet I have says “Take as directed by a physician” and the pharmacist issuing it said, “Do you have any questions?”  That’s the sum total of the information I received. I wasn’t worried because I’d already had the drug while I was in hospital without any adverse reaction. Of course I was simultaneously off my dial on pain medication.

When I saw my surgeon today and told her about his side effect she replied that I’m the first patient she’s ever had with that kind of reaction. I wonder. Maybe I’m just the first relentlessly optimistic patient for whom any hint of suicidal thoughts raises an alarm.

I stopped taking it yesterday. The sun came up this morning. My black mood lifted. I am myself again.

I wanted to write this post as a warning to anyone else on gabapentin, or anyone caring for someone taking it. Monitor your mood carefully. ANY thoughts about suicide, even hypothetical or third person thoughts about suicide, should be taken VERY seriously. Talk to your doctor.

The other thing that’s happened in the last few days is that a number of people have brought this story to my attention:

http://medicalxpress.com/news/2014-09-breast-cancer-specialist-advance-treatment.html

In summary, it’s about the success of stage three trials in the USA where they’ve added new medications to the chemotherapy for women with triple negative breast cancer and greatly increased the number of women achieving a full pathological response. A full pathological response means complete tumour death prior to surgery and it means that your survival odds improve dramatically, your risk of recurrence decreases and so does your risk of metastatic disease.

I didn’t get a full pathological response.

It looked like I might, but I didn’t.

If you read my last post you’ll probably recall that I spoke about the ‘bleeding edge’ of cancer research. It’s possible that if I was diagnosed this year instead of last year I would have been offered this treatment. That makes me sad.

It gets worse.

Because I’m the kind of person that researches everything I was aware of this research when I started chemotherapy. I took a copy of a report on it to my oncologist the second time I saw her. I wanted to know if it would be possible for me to have these drugs added to my chemotherapy because the early trials had been so promising. It wasn’t.

This is what it’s like to have cancer, to survive cancer and to face the future risk of cancer coming back. Timing can be everything. Location matters too. Most of the research into triple negative breast cancer is happening in the USA and the UK. That makes me sad too.

But what it doesn’t make me is suicidal!

 

One Month After Mastectomy

It’s one month today since my bilateral mastectomy. The phrase ‘bilateral mastectomy’ seems far too mild for what’s happened. I’ve had my breasts cut off.

Physically I’m healing well. The scar on my right side is neat and clean. This is my ‘healthy’ side but I decided to have this breast removed at the same time as the other one, partly because I thought I would feel better being symmetrical. I do. I also had it removed because I don’t think I would have stopped worrying about my remaining breast being a source of cancer.

I am happy with the decisions I’ve made. I’m not happy about having to make them.

My left side is puckered and the pores of my skin are noticeable. This side was treated with radiation in the earlier months of this year. The skin was never going to cope as well with surgery. I’ve been fortunate to have a well healed mastectomy scar because complications can include the wound re-opening or the tissue dying. The wound from the breast conserving surgery in July (when we discovered the invasive cancer that led to the mastectomy) is not healing well. There’s a small hole in the wound and a small amount of discharge from it. I’m seeing my surgeon on Thursday to have it ‘re-excised’, which means cut open again and rejoined.

There are two veins running down my body, starting from the ridge under the place where my breasts used to be. There’s one on each side although they are in different places. They feel like indentations under the skin, as if the vein has collapsed. There’s a name for this. Something disease. My surgeon did tell me but I’ve forgotten. It seems that both veins get pinched off during surgery to prevent bleeding. In some people they collapse. They are uncomfortable and feel a lot like the drains felt when they were under my skin post-operatively. Sometimes they are painful, as if someone has cut two lines down my torso.

(Note: This condition is called ‘Mondor’s disease’. I’m back here in February of 2016 because it’s just recurred on my left side.)

There’s still a strange intermittent sensation in my left shoulder, as if someone is jabbing me with a needle. My doctor says this is nerve pain and she’s prescribed more gabapentin. I’m only taking it at night and so far it doesn’t seem to be making much of a difference. I could take it in the morning as well but it makes me feel like I’ve had half a bottle of wine, which sounds like it might be a nice thing but it isn’t when you need to drive somewhere.

The gabapentin is also for the nerve pain in my back and chest. How ironic that one of the great benefits of a mastectomy is not having to wear a bra and yet one of the consequences is felling like I’m wearing a very tight bra! This is also a common complication of a mastectomy and it should improve with medication and time.

There’s a fluid build up on both sides. Yes, this is another common side effect. Interestingly my healthy side seems to collect more fluid than the side where I had the cancer. My doctor drained about 60mls out of the right side when I saw her last week. It feels as if it’s just filled right back up again. You can leave seromas alone and they will gradually be absorbed over a few months. There’s something about them that makes me squeamish. I’m hoping when I see the surgeon on Thursday she can drain them again and that this time they will stay drained. I suspect it’s just one of those things, like so many things, that needs time and patience.

Mentally I suppose my status is about the same as my body. Healing slowly. Not quite there yet. I still get a shock when I catch sight of myself in the mirror. I don’t look terrible. My beautiful daughter says I look slim and ‘like a fashion model’. My wonderful husband tells me I’m gorgeous. I’m just waiting for my brain to integrate this new version of my body. When I close my eyes and think of myself, I still have breasts. When I wake up in the morning I forget I don’t have them. I still feel them. They are my phantom breasts. There’s no question that I look much thinner. This is odd because, apart from the weight of my breasts, I’m no thinner than I was before the operation. A flat chest reads as ‘athletic’. I also think that looking down and seeing my tummy makes me much more likely to hold it in.

One of my friends asked me last week how I was feeling. “A bit flat.” I replied, before I realised what I was saying. Puns aside, I have felt flat. I really only had two weeks to process the news that my cancer was back and invasive. Then there was surgery and two or three weeks of just healing, recovering from the anaesthetic, letting my wounds stabilise before I lifted anything heavy and eating well to get my energy back up. It’s really only now that I’ve had the opportunity to reflect on it all.

I am now a statistical outlier.

Before all of this I knew there was one chance in four of the cancer coming back in the first five years. I knew that if I made it to five years the chances of the cancer coming back would be significantly reduced and I was looking forward to throwing a big five year anniversary party. Not only did the cancer come back, it came back just inside the first year and was already invasive when it was discovered. This is so unusual that there’s no data for it. The treatment I had should have worked. It has worked for the majority of women that have had it. The radiation oncologist speculated that I had ‘dormant DCIS’ which I found interesting because I thought the whole point of radiation was to kill off anything that wasn’t quite a cancerous cell, along with any stray cancerous cells.

My surgeon initially speculated that I might have ‘radiation resistant tissue’. This would fit with the way my skin held up so well during treatment. A couple of months ago I noticed the hair in my left armpit growing back. It’s one of the only benefits of radiation, not having to shave under that arm any more, so I was surprised. I remember thinking at the time, “I hope this doesn’t mean my radiation failed.”

At my last visit to the surgeon I asked her what she thought went wrong. I wondered about the marker clip that had been left behind during my first surgery. The calcification that showed up on the most recent mammogram appeared to be associated with the marker clip. It was trailing in a line away from the clip, and was thicker where it joined the clip, a bit like the tail of a comet. I wondered if the movement of the clip through my breast tissue might have caused scarring that increased the risk of recurrence. My surgeon replied that the clip shouldn’t move and that it wasn’t the cause of the recurrence. She had intended to remove it during the first surgery and missed the reference in the initial pathology report stating that there was no sign of the clip in the tissue sample. I missed it too. I was too anxious about the discovery of DCIS under the tumour.

The doctor that inserted the clip did say at the time that they can move. She also told me when I went back for the second surgery that it’s common practice to leave them in so that the correct area can be scanned in followup testing.

I had neo-adjuvant chemotherapy (before surgery) with the intention of treating any cancer anywhere in my body and, simultaneously, hitting the four tumours in my breast. This treatment killed three of them. When the remaining tumour was removed my surgeon did so with clear margins but obviously left behind an area of tissue that previously contained the three dead tumours. This is standard practice because it minimised the loss of breast tissue. I wonder with triple negative cancers if it might not be good practice to remove all of the effected tissue for biopsy.

I am not a doctor.

None of my speculation is meant to constitute any criticism of my medical team. I honestly believe that I’ve had the best possible treatment available. It’s my investigative background that causes me to speculate. I’m curious. I also think that my unusual circumstances are an opportunity for discoveries that might benefit other people with triple negative breast cancer. I want to know what went wrong. I want to know why this happened.

My surgeon gave me this answer: “We don’t know.”

This is the bottom line when it comes to cancer. The best available treatments work for most of the people most of the time. Inherent in that statement is the implication that some of the time they don’t work, or don’t work as well.

I am not unreasonably anxious about what this means to my survival odds. It can’t be good. You would think that having no breast tissue would mean you can’t get breast cancer but it doesn’t. Triple negative cancer notoriously recurs in scar tissue and I now have a whole lot more of that. Who knows if keeping my healthy breast would have been a better option? Who knows if keeping my high risk breast would have been less of a risk than all this scarring? The honest answer is “Nobody.”

One of the greatest complications of cancer research is the difficultly in establishing what the best choices are for any individual patient. Even something that’s been highly successful for most people might not work for me, or for you. We all bring our own genetics, histories, habits and pathologies to the treatment room.

There’s also a ‘bleeding edge’ to cancer treatment. I read the other day that they are predicting an end to chemotherapy inside ten years. It looks like the future of cancer treatment will include re-engineering your own T cells and putting them back in your body to fight the cancer. This is not science fiction. There’s a doctor in Seattle in the USA already using this technique to treat childhood leukaemia. The treatment we have available to us today is just the best available, not the best. In time there will be a cure. Every single person with cancer hopes to live long enough to receive it.

It’s possible that I could still get local recurrence. My surgeon has told me to watch for lumps under my scars, under my arms and in the ridge above my collarbone. It’s also possible that I could get metastatic disease. If I get this cancer anywhere else in my body it’s still called ‘breast cancer’ even though I don’t have breasts and that’s not where the cancer would be. Picking up metastatic disease is more difficult than spotting local recurrence. It’s most likely to happen in my bones or my brain or perhaps one of my major organs. Symptoms might be vague or non-existent. My surgeon’s advice regarding anything suspicious is to wait a couple of weeks and see if it changes or goes away.

My greatest fear is that my life is now a cycle of recurrence followed by treatment followed by recovery followed by another small island of time where I’m relatively well and able to enjoy life. Ultimately that’s followed by recurrence that can’t be treated. I am frightened.

I’m dealing with the fear by making room for it, by describing it here and by accepting that for anyone in my situation it’s a completely normal response. I’m also practicing yoga and meditation. Most importantly I’m taking time to really enjoy the things that matter to me. I’m closing my computer. I’m spending time in the garden. I’m cherishing time with my husband, my daughter and my friends and extended family. Life goes on.

It could be all my fears are for nothing. It could be that the cancer is gone forever.

We don’t know.